Tipping Point: The Resistance Is Gaining In The Lyme Wars

For two decades, Lyme disease has had dueling identities.

  A burgeoning epidemic wrought by ticks. A raging controversy over why patients stay sick — and what to do for them.

  Now, however, the medical model that spawned the Lyme Wars – enshrined in treatment guidelines that say short-course antibiotics are curative — is yielding to a more nuanced picture. 

  This new image is of a disease that outwits antibiotics and immune systems; is plagued by diagnostic failures, and is capable of inflicting lasting damage. It is an image that challenges the picture of medical certainty that has long been Lyme.

  Over the past three months, I spoke or emailed with 76 leading scientists, physicians and patient advocates from 12 countries and three continents for a status report on the contentious debate over Lyme disease. This included 32 researchers, 24 advocates and 20 treating doctors (with some overlap among groups, such as doctors who published research).

  My four-question survey tapped mainly into a movement that has long fought prevailing medical wisdom on Lyme disease, which I, as an investigative journalist, found in eight years of reporting to be limited and flawed. I also received responses from eight mainstream physicians and researchers (of 14 contacted) who have had outsized influence over Lyme protocols and have long endorsed them. Most still do.

   But among critics of American Lyme disease policy and practice, there is widespread belief that their collective efforts – in science, medicine, public education and lobbying – are finally breaking through. After decades of stagnation and argument, the Lyme debate has reached what my survey suggested was, and some called, a “tipping point.”

   Here are just some of the developments driving this:

·    There is wide recognition, even among those who have long defended it, that the 25-year-old Lyme test fails in too many ways. Progress has been reported toward a better diagnostic, for Lyme and other tick-borne infections, the missing link and greatest impediment to resolving treatment issues.

·    New science, often funded and propelled by nonprofit groups, shows how the adaptable Lyme spirochete survives treatment in animals and further documents lingering symptoms and potential for long-standing damage.

·    Congress and government have stepped up, finally, allocating more money and assembling a working group that has identified gaps and mistakes in controlling ticks and their illnesses. The group’s work led to a new National Institutes of Health plan and government requests for research proposals.

“For decades, there was no light at the end of the tunnel for Lyme patients,” said Pat Smith, a leading patient advocate who heads the nationwide Lyme Disease Association. “Now, we can see a glimpse of that light.”

A Corner Turned 

  These developments, and more, are prompting real, if guarded, optimism that someday soon, the infection may join the annals of other sweeping epidemics like AIDS, tuberculosis and syphilis, for which there are essential tools: good tests, treatments and preventatives. These are lacking for Lyme disease.

  Fred Verdult, a longtime activist who was knighted for his work in The Netherlands, exemplifies the problem and progress. He takes one pill daily for HIV infection and has never been ill from AIDS. He has been disabled by, and treated with dozens of pills daily, for Lyme disease. “The contrast with Lyme couldn’t be greater,” he wrote in answer to my survey.

   He nonetheless sees a corner turning, in particular in the use of repurposed drugs that are helping patients like him. “It will take years,” he told me. “But the final result is very clear: In 2030, Lyme and other tick-borne diseases will be considered as normal diseases.”

   Others agreed – 50 of the 76 respondents (of 100 contacted) were unquestionably hopeful. Only eight saw no cause for hope.

   Stephen Wikel, whose discoveries on tick saliva are helping develop a vaccine against ticks themselves, which carry more than Lyme disease, said he was “more optimistic than I have been in many years.” Eva Sapi, whose studied the role of antibiotic-resistant biofilms in the infection, said, "I am extremely positive that we turned the wheel.”

   Nicole Baumgarth, who showed how the Lyme pathogen disables the immune system in mice, was heartened by “a growing awareness and a growing interest in doing something.” And Monica Embers, whose work on post-treatment infection in rhesus macaques helped rewrite the Lyme narrative, said she is “much more hopeful.”

Hurdles To Clear

   The optimism was predictably tempered. No single test has emerged as a sure-fire tool to fill the void at the heart of the Lyme debate, and some said a new test may be faster but not much better. Moreover, new draft treatment guidelines, unveiled last June by medical societies that have long dominated the debate, reinforce the view of Lyme disease as an acute, readily treated infection, as they long have.

   Clearly a chasm still exists. 

   But it is shrinking on the strength of a determined insurgency.

   For two decades, findings of Lyme spirochetes — in treated dogs, mice, hamsters, and, even, people — were written off as flawed experiments or aberrations. But a new wave of science in the 2010s — Embers’ at Tulane, along with work at UC-Davis, Johns Hopkins, Northeastern and Stanford universities – has shown that Lyme bacteria, which, like syphilis, are spirochetes, are champion survivors. They tolerate antibiotics by the score, especially medicine’s first defense: doxycycline.  

   Moreover, by testing hundreds of compounds in test tubes, this science has identified drugs that are more effective against the Lyme pathogen. “We now have some possible treatments that may be better than the current Lyme therapy” for persistent disease, wrote Ying Zhang, a Johns Hopkins researcher who tested natural oils and drug combinations to kill resistant bacteria.

   This basic research is being applied in the offices of physicians like Richard Horowitz, whose patients improved on novel use of a leprosy drug and tandem therapies. For him and patients who have failed prior treatment, he said, “It’s an exciting time.” As significant, Dr. Kenneth Liegner reported success with an old alcoholism drug, disulfiram, which will be tested in the first patient treatment trial since the mid-2000s, now enrolling at Columbia University.

   Alan Barbour, among the pioneers who identified the Lyme disease organism in the early 1980s, called the concept of persistence – namely whether the spirochete survives common antibiotics — “quite controversial” among mainstream scientists.

   But, ideas are changing, he indicated when we spoke for my survey. “Obviously there’s recognition that things are sticking around – whether it’s DNA, proteins or organisms that don’t grow,” referring to the failure to culture residual bacteria. “There’s been some overall change in opinion. It had been dismissed out of hand. Now very good scientists (he named two, from Yale and Tufts) are studying this phenomenon. There’s something going on there.”   

New Guidelines, Same Issues

   My survey posed four questions to Lyme experts and advocates in the United States, Canada, nine European countries and Australia: Are you more or less hopeful? Have you seen movement in public institutions? Has there been a breakthrough? What are the implications of the draft care guidelines?

    On the first two questions, respondents were mostly positive, with more media and government attention noted. While no consensus emerged on a breakthrough, progress on better tests and treatments – in particular disulfiram — were often mentioned, as was the central issue of whether the infection can be chronic.

   “Research showing that Borrelia (the Lyme bug) can actively interfere with the immune response … and become tolerant to antibiotics,” wrote Holly Ahern, a microbiologist and patient advocate, “qualifies as a scientific breakthrough.” At least nine respondents agreed.  

   Only two respondents found reason for encouragement in the new guidelines, and both were allied with the group whose guidelines unofficially dictate Lyme disease care, the Infectious Diseases Society of America.

  Paul Auwaerter, a former IDSA president, wrote that “patients should have confidence” in the work of diverse panels that crafted the guidelines. Paul Lantos, a Duke University pediatrician and lead author, wrote that the guidelines “give comprehensive guidance for the diagnosis and clinical management of Lyme disease.”

   “I would hope they will simplify care of affected patients,” wrote another guidelines author, who did not want to be named. “But I doubt they will quell the debate.”

    Indeed, respondents who challenge the prevailing Lyme paradigm described the guidelines with words like: “glaring oversights and omissions,” a step “backward” (four), “status quo,” “narrow,” “circling the wagons,” “bull***t,” “misinformation,” and “profoundly disturbing.”

   For these scientists, physicians and advocates, the guidelines fail to address the core problem: The widely cited 10-to-20 percent of early treated people who stay sick after recommended treatment. (With at least 300,000 cases yearly, this computes to 30,000 to 60,000 patients; many more are treated late.)

   The guidelines say these patients’ symptoms — of fatigue, joint and muscle pain, cognitive lapses, anxiety and depression — may be “quite disabling.” Nonetheless, such “non-specific, subjective symptoms,” the directives say, do not merit further treatment, even as studies are documenting objective brain inflammation and nerve damage. 

   Brian Fallon, a Columbia University researcher, said the guidelines minimize the benefits of retreating chronically ill patients with antibiotics, found in his and another treatment trial. “While the IV treatment clearly posed serious risk and thus was not recommended,” he wrote in response to my survey, “that simply means that other antibiotic modalities — e.g., oral ones — need to be tested so that patients are not deprived of the possibility of a marked improvement in health.”

Nonprofits Fill A Void

   As with other illnesses, Lyme disease has struck the wealthy and talented, raising its profile most recently with Justin Beiber’s story of infection. But the tick that bit Neil Spector, a top-tier breast cancer researcher, did more than lead to undiagnosed Lyme disease and a heart transplant that saved Spector’s life.

   Now, he and a team at Duke University are turning their considerable knowledge of therapies that target cancer cells to find and kill the Lyme spirochete in people, what several respondents called a hugely hopeful possibility.  “We think we could actually be ready fairly soon,” Spector told me, to do what’s called “investigational new drug” studies required before clinical trials in people.

   Spector’s work has been supported by another significant development in recent years — the growth of well-heeled nonprofit groups whose founders have suffered the worst ticks can offer and whose largess is challenging the biggest powers in Lyme disease. Groups like Bay Area Lyme Foundation, Global Lyme Alliance and the Steven and Alexandra Cohen Foundation have put up millions of dollars for research, filling a void left by paltry government funding.

   Such support – and the science that has resulted – is the envy of patient advocates in other countries, where there was less optimism and available care.

   In France, the Czech Republic, the United Kingdom and Ireland, respondents said sick Lyme patients are almost always told – as they often are in the U.S. and Canada – that they suffer mental health problems, fibromyalgia, chronic fatigue syndrome or other conditions. Little treatment is available in Sweden — with one of the Lyme highest rates in Europe — since the country’s leading Lyme specialist was suspended in 2017. And in Australia, “The situation has never been more dire,” wrote Sharon Whiteman, who heads the Lyme Disease Association of Australia. (I’ll address the global picture, and America’s role in it, in a later post.)  

   Beyond laboratory research, Lyme experts saw hope in everything from newsrooms to courtrooms. Stepped-up media coverage is adding urgency, while journal articles are helping define the symptoms and estimate the toll of poorly treated tick-borne illness.

    Of great significance, a federal lawsuit against the crafters of American Lyme treatment has survived two years of legal wrangling – including, recently, a major motion to dismiss. Filed by 25 patients, the suit charges the IDSA, six of its physician-researchers and eight insurance companies with conspiring to deny patients care. In another recent development, three insurers settled.

Wave Of Change

  The U.S. Centers for Disease Control and Prevention underscored the Lyme disease toll by acknowledging in 2013 that just 1 in 10 Lyme cases are reported to authorities – increasing the estimated yearly total now to 300,000 to 400,000. Advocates were encouraged recently when the agency said the infection could be passed in pregnancy, a conviction of many infected mothers for which there is a body of scientific evidence.

   Of concern to advocates, however, the CDC called the outcome “rare,” as it has with potentially fatal Lyme carditis; there is scant data to support that. Moreover, the draft guidelines fail to even mention the risk of Lyme disease to pregnant women — unlike two previous versions, in 2000 and 2006.

    A tragic but crucial turning point in the Lyme debate occurred last October, when former U.S. Senator from North Carolina died of complications from tick-borne Powassan virus, a virulent disease that leaves half of victims with neurologic disabilities. Her death, at 66, led to Congressional passage of the Kay Hagan Tick Act, which allocates an unprecedented $150 million for a disease long starved for money. 

   In a public statement in February, Eric D. Hargan, Deputy Secretary of the Department of Health and Human Services, himself referred to the potential for a “Lyme tipping point,” exemplified in an extra $58 million in the 2021 federal budget for tick-borne disease.

    This drip-drip-drip is becoming a wave of change on the insurgent side. Yet ripples were evident on the prevailing side, too, sometimes in small, carefully worded concessions that I was asked not to quote.

    Jorge Benach, who worked with Barbour and Willy Burgdorfer to identify the Lyme disease bacterium and agreed to be quoted, acknowledged his views have evolved.

  “Yes, I recognize that there are problems with the test and with a subpopulation of patients that has lingering symptoms,” he wrote in an email, referring to what the CDC calls Post-Treatment Lyme Disease Syndrome.

   “If I was a younger scientist, I would like to study PTLDS with modern immunological tools,” said Benach, 74. “I think the medical profession doesn’t question the existence of PTLDS, but its etiology” — namely what causes it – “needs to be worked out.” 

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This story was corrected on March 1, 2020, to say that Jorge Benach worked with Alan Barbour and Willy Burgdorfer and that he is 74 years old.